All I Want For Christmas...

This year, all I want for christmas is comfort. Financial, emotional and physical comfort!

Last year, we were struggling so bad, I had to work at walmart during the absolute most brutal time in this walmart's history. My mom was desperately searching for a job, her days consumed by resumes and phone calls. Grandpa's sleepless nights with grandma, it was all too much and we never decorated. Never pulled out the pretty lights or garland, not enough money to purchase food let alone gifts. As a family, we never even imagined hardships like that, yet it became our lives.

This year, I see the forces are on our side. It may not be a perfect situation, but it is definitely better than what we've fought with all year.

Today, we are all going to team up and venture into the unknown, aka the garage, to find our christmas decor. Also, I am attending a webinar addressing performance measure gaps in home and community-based services to support community living at 10 am, my time. Then, sometime today, we are supposed to hear from our care coordinator about my employment verification. Busy, busy bees!

I thought it'd be a good idea to document my goals while I'm in this mindset:

Short Term Goals:

1. Take Care and Wake up: Take care of myself, make appointments, eat better, exercise and enjoy.
2. Burden relief: Once I start getting paid, I can really take some of the burden off my gracious mother, financially and emotionally.
3. Clean and Organized: Start on keeping things tidy and create a habit to keep it that way.
4. Business vs Busyness: Prioritize my time better. I'd love to put my handmade things back on my storevny!
5. Small classes: Look into small classes to take at the workforce training center.

Long Term Goals:

1. Things are better: I've gotten my teeth fixed, I've been to the doctors and I'm all caught up!
2. Business woman: I have pretty pieces of paper that say I can do stuff. Hopefully, its pertaining to my business.
3. I have my license: Because everything has worked out so well, I was stable enough to get my license :)
4. Jackpot: I've won lots of money and I am currently working on the blueprints to my castle!

Haha, I have jokes! But, really, that last one should happen!!

Not too much, not too little. Those things are the heaviest that have been weighing on me for over a year now.

Papa keeps telling me, "Put your big-girl-panties on and do it!" 

Haha, yeah, I'll get right on that as soon as I can afford a pair!

Moving Forward

I guess I can start with this past Tuesday…

My boyfriend took me down to the agency where I had to drop off my application and get a TB test. I was told that I'd be "employed" under them, answer  to them and what not. I'll tell ya, I was not happy about it. The atmosphere was strange, the overwhelming sense of entrapment was almost too much. The doctor that gave me the TB shot was cold and quick, no sense of humor, really. The whole thing was weird anyway.

Thursday, I had to attend the orientation for this agency. The mile high stack of paper work, they had me sign things that I probably shouldn't have signed yet, I felt like I was selling my soul. So, I had to ask "What is the hourly wage here?", the receptionist said "Well, as far as I know, through medicaid its $8 an hour to start. The highest I've heard of is $8.50"…My jaw hit the floor! I said to her "Thats it?! For everything thats required and expected of me through your agency and I only get $8 an hour?! Why?!" she said "Well, private pay generally pays more, but through medicaid, its much lower."

It was verified over and over again that I not only get paid minimum wage for janitorial and care duties, but I will also be micro managed through them. Random and unannounced visits, time sheets and duty checklists….I am just floored. I was under the impression that start pay was $10 an hour, that would've been perfect! So, the awesome lady explained everything about the change in the program that has effected the pay. More people qualify for the program so the money in it is stretched thin. Ok, thats fine, I understand…its what came next that turned my face red and my ears hot…

Lets call her Jay:

Jay: "Because there are more people in the program, a lot of them that have been in the program a long time got hour AND pay cuts. The program changed to allow more families to do what you are doing. BUT, the next change they are going to make is called "Natural Care". Its where family members who stay home with their disabled loved one will no longer get paid to do so because its natural care, its considered a favor more than an obligation."
Me: "Thats bullshit…I'm sorry, but if thats the case, MORE elderly will end BACK up in the nursing homes again!"
Jay:"I know, but their focus has turned to the elderly that don't have family support but want to stay out of a facility. For example, An 85 year old woman who's husband died and no children, she'll need the program more than, lets say, your grandmother. Because your grandmother has "Natural Care", she won't need outside assistance."
Me: "No, She can't HAVE outside assistance, she's been kicked out of so many places, we literally have no choice but to keep her home and care for her ourselves!"
Jay: "Oh, I understand, honey. I personally don't agree with what they are doing, but what do we do about it? Everyone in charge of any government agency is stupid! They don't get it!"
Me: "YES! Thank you! This whole thing, everything that we've been through, no one wants to help us! No one wants to take a challenge, they only want to follow the 'rules' and collect that check!"


Much more conversation was made, but that was one that just…Haunted me. I was so angry. And you know what? There isn't a damn thing I can do. I'm seen as a low class peabrain…then why are all the idiots running my life? Screw this government, our country and society is going down and I will laugh as I watch it fall. The sheep will follow him into the darkness.

UGH! lol will I ever be satisfied, you ask?

NO, no I will not. Utopia doesn't have a place on earth, thats for damn sure!

But, in light of it all, my man stayed with me the whole 4 hours I had  to be there!! What a trooper!
Oh, and I have to tell you this…

The receptionist, lets call her Tammy:

Tammy: "Ok, just go down and have them sign your tb screening and bring it back."
Me: "Thank you, lets hope its negative!"
G-man:"Yeah, I'm sure that rash and fever mean NOTHING"
Tammy: *uncomfortable laugh*
…a few minutes later
Me:"Hear ya go :) "
Tammy:"I'm sorry, we don't accept positive TB results..."

Me:"…….

……You almost got me"









Tammy: "Oh really? That would've been funny…"

LOL, WHAT A WEEK!!

Friday Update 2

The first lady showed up, then the 2nd lady followed shortly. They talked briefly just to find out the first lady didn't need to be here, the 2nd lady stayed and here's how it went:

Lets call her jane.

Jane explained the whole situation and asked a LOT of questions. She met grams and said:
"Well, this is definitely a unique case…"
Pops: "You have no idea how many times we've heard that" he laughed
Jane: "I'll have to talk to my supervisor and brainstorm on how to go about this. I'll tell you now, the maximum hours I've gotten for a caregiver was 24 hours a week for a bed ridden stroke patient."
Me: "Only 24?! This is a 24/7 job. The other program we were with got $3,000 a month for doing nothing at all!"
Jane: "I know, honey. But the programs available for people in your case are limited on funds. If its the money you are worried about, they can send you to other homes through out the week…but your point is care for your grandmother, and I understand that. Like I said, I will pick my supervisors brain and get back to you early next week."

So, she left after an emotional encounter with grams after pops played his accordion and sang grams favorite christmas song. Grams even teared up, her chin quivered then Jane's eyes watered, then I almost lost it when pops got choked up…It was quite the emotional roller coaster.

But, all in all, there is a 90 day period where I'm supposed to go through a series of training courses provided by the company that will employ me to specifically care for grams at home. The other trick is choosing a company and finding the patience to wait that long for any compensation.

I told Jane how badly I wanted to get grams some new clothes and shoes and a wheel chair…Jane said that medicaid rarely ever provides a new wheel chair, that we'd have to purchase one ourselves. The other HUGE issue is the maximum amount of paid caregivers is…one. Only one person can be paid to care for her with a single backup caregiver that picks up the missed hours by the primary caregiver. For example:

• One caregiver
• 10 hours a week
• $10 an hour

I miss 3 hours one week, my backup can only make up those 3 hours, no more.

I work 10 hours a week at $10 an hour, thats $100 a week, $400 a month…

Now, what on earth would make anyone think thats ever enough for someone in this situation?!

So, Pops and I talked for a while about that. He didn't think it was worth the hassle for that little pay, but then we remembered that the program grams was approved for paid family MEMBERS, plural. Not just one! We went back to the website and realized, Jane never said anything about this program, that she was only focused on the basic care package from her company! But now it was the weekend and we have to wait to talk to her about it when she calls next week.

I'm not sure how long this will take or how long we all can wait, I do know that money is tight and patience is thin. For all we know, this is all we get. Luckily, I have taught myself to not get excited about things that sound too good to be true, so, here's to hoping…once again!

Friday, Update 1

Good morning. 

I got up with a strong sense of urgency…and so far, they are late! LOL

Its ok, just breathe! Just since this morning, many plans have changed, ideas shift, I do not know whats going on anymore and grams is extra unpredictable today. One minute she's laughing and the next she's gritting her teeth and scrunching her face while whaling like a banshee!  But thats normal, its the pointing that has me nervous haha.

So, any who, checklist:

• stomach in knots
• house as clean as it'll ever be
• grams is being herself
• headache from tension

Yep, check to all. I'm right on track!

BY THE WAY! If it wasn't for jenna marbles, I'd lose my damn mind! The Whisper Challenge she did, oh my gawd, makes me laugh so hard!! I needed these giggles!

Thank you, Jenna!!

The Day Before

Today is the day before hope is made or hope is lost.

I was ill yesterday, which puts me way behind on everything, all the cleaning and rearranging that has to be done before tomorrow. Most of the mess is my own, from crafting and my sorry ass attempt at organizing lol!!

I'll admit, I'm very nervous! I keep having these flashes of daymares where these people just shoot us down with their brows furrowed. Shame us for ever thinking we were any kind of deserving, like so many have done in the past. Or, they approve us for minimum pay at minimum hours a week with limited resources and they pocket more money because of it. All these horrible scenarios, back to back, grandpa and I keep jumping at these awful possibilities that torture our sleep deprived minds.

With the idea I have in my head of how this will go, I have a better chance of opening a 24 hour daycare in my home! It may not be nearly as bad as my mind ponders it to be, but after everything we've been through, we have learned to expect the worst.

I'm a 'flowers and rainbows' kind of soul, where my initial thought is that of light hearted people that want to give their all and then some. This world is almost too ugly for people like me!

What ever higher power that is watching over us, please see us through great success! My family needs a good deed!

And when this is over and we have what we need, that sigh of relief will be the highlight of my year, the ability to take total care without worry or doubt will be the highlight of this past half decade. The ability to smile a genuine smile will be the highlight of my life.

My forehead is scrunched up into a mess of lines, going this way and that. I need a hug, I need encouragement.

And now, I need to pee! lol

Wish me luck on this whole cleaning thing!

No Need For Finger Crossing

Ah, at last…I say again, a sigh of relief that is most overdue!

Friday, Friday, gotta get down on friday!!! Its the day that we've been waiting for, for almost 3 years!

The politics in this particular category of "Lifestyle" has me wanting to write a book. Everyone needs to know what we've been through, and maybe help other families avoid the same mistakes we made. I want to warn the world about this. Maybe help you prepare yourself better, so you may keep yourself in tact through the whole process. I lost myself in the midst of false hope, emotional anguish, life shattering disappointment, and most of all, the straight drop to the underbelly of the deepest depression I've ever known.

Everything zipped by without my knowledge! Family tore us down, ripped us to shreds and stabbed our backs with the sharpest of knives. Other family stood in shock as they watched our world bend and break before their eyes. You tend to forget your accomplishments when they do you no good in a tar pit.

Creating an ACTUAL support group that doesn't scam you out of money, supporting each other through these impossible times, thats something I need to do. I didn't have a support group outside of these walls, but, honey I wish I had!

All the wondering and worry…its still there and very fresh!

We still wonder if Mama will come back, wakeup one day and know who we are. Know who her adoring husband is, know how much we cared for her all this time. None of us can come to terms with the idea that she's gone forever, in an abyss we'll never know to tell about. Its waking up every day and pondering on outlandish ideas and sulking in the realization that even a good idea, no one would help.

Today is Wednesday, my stomach is in knots. I'm too numb to be excited, so I'll dub it as stress of their judgment. Last night I was on my knees with bleach trying to reach every crevice in hopes that it'd be well enough to the eye, like solid proof of what we do, right there in a squeaky clean corner. HAHA oh, boy…someone turn this stress to excitement for me PLEASE!!




Ok, all done!

No need for finger crossing, I'll take it as it comes, and I'll deal with it when it does.

Careless Much?!

This Morning, grandpa got a return call from PACE regarding his experience with the hospital they sent his wife to. Of course, I had to eavesdrop while he had the conversation on speaker. This woman acted very unprofessional, instead of doing the proper thing and caring for the caregiver, she defended the hospital. What she SHOULD have done is looked into the problem on the hospital's end, not bully the person who had the negative experience. THEN, she explained how she "doesn't think your wife needs respite care because she's not at the end of her life", she did not even hear my grandfather out on this. He specifically told her that he NEEDS the in-home care that PACE does not provide, once again, head-butting the caregiver instead of having a reasonable answer. She insisted that he drop grandma off at the same hospital that gave her 100% polyester sheets when he explained she need cotton, she's allergic to polyester. The same place that neglected to see her attack other patients and NOT step in. The same hospital that DID NOT check on her after dropping her food off, or to see if she needed to use the restroom. HOW DOES THIS MAKE SENSE?! How could this woman NOT look in to this?

Now, my grandfather no long feels comfortable taking grandma anywhere! Thanks lady. In my last post I explained how I cannot go on like this…that feeling just got worse. If she would've just comforted grandpa a bit, say something like "I will have a talk with the head of geriatrics and I will send one of my people to monitor the care given to you wife during her stay". THAT WOULD'VE BEEN GREAT! Why couldn't you have just said something like that?!!! What would have been so bad about reassuring someone like that?????? I really thought this program would at least ATTEMPT to live up to their logo, their reassurance that they "Can give you peace of mind" and "Care for the caregiver", or just "CARE", that word is tossed around the lips and the text of the entire program, could you at least try? Or bullshit it to give us false hopes? no, just one big kick in the teeth. My heart hurts, this sucks.

Looking up so soon?!

Ah, indeed! My life seems to be turning around for the better. Slowly, but surely, this ball is starting roll and my weight seems to lift more and more each day.

I have been so exhausted from working 3rd shift and juggling home life, but the good news is that my mother has found a wonderful job with excellent benefits, my grandfather has finally been approved for his retirement checks in turn, making an open door to furthering my grandmother's aid. The forces surrounding me now have blessed me and mine with relief and produces a light at the end of this long, dark tunnel that felt as if it'd never end.

I couldn't be more grateful that life is looking peaceful and happy at this point. I'd kiss the ground if I was certain it'd be enough proof of appreciation!

Now, I wait for that SIGH of relief :)

Chaos, Pain and Wonder

I am Zaney and I live in chaotic world that most 21 year olds should never know. I am goth, I live at home with my mother and grandparents. My grandmother suffers from alzheimer's, every day is a constant struggle and a worry fest that my life will never recover from this ordeal.

I recently broke it off with a man I'd been with for over 5 years, young love only lasts so long. The main reason we split was his inability to cope/deal with our living status with my family. Too broke to live on our own and too immature to save a penny, we suffered as a couple, we bickered and fought over stupid things. The day he expressed to me that he wasn't happy was the day I woke up in my own hell...reality.

I, since, found a young man that has proven to be man indeed and I couldn't be more blessed in that aspect.

On the other side of things, my grandmother's alzheimer's has become the center of all our problems. Grandpa was forced to retire, and him being the soul provider of the household, this isn't good. My mother can't find a job, so its up to me now. I work night stock at walmart. Paying into the house only $800 a month will not cut it, but our options are extremely limited. My grandfather has a sense of denial when it comes down to dealing with my grandmother's disease. He swears that she might someday wake up and he wants her to be here with him when she does. Professionals have explained in full that his fantasy will never become reality because they know so little about this disease, they cannot do much but sedate her with medications.

Being a 21 year old female, I never thought that my life would end so suddenly. My boyfriend is brave enough to enter this house with confidence, even against my better wishes. He's offered to share his apartment with me, he's offered to move into the house to help pay the bills. Everything this man has set out on the table, I feel guilty even considering. No one understands how badly I want to leave this situation, how badly I just want to run, how badly I want this to end. If I left now, my family would crumble where they sit. If I stay, I may end up needing a bit more than professional help. I've made the phone calls and I've pleaded with many, we just need help. But, as I sit here now, 2 years of back and forth, 2 years of dead ends and endless doctor bills, 2 years of wondering and crying, we still sit here helpless and tired. My grandmother is not on any medication, my grandfather thinks its a bad idea. While this disease eats her up inside, she's tortured by hallucinations, delusions, mental agony and a constant home sickness, and no medication to relieve the pain. In every way, this is torture for everyone, but my grandpa doesn't get it! I know its his wife, but she needs help and he isn't helping her by keeping her here, unmedicated.

A program called PACE has offered their help recently, but its like a half-assed daycare. Whether the program is extremely unfunded or too new to do much more, it seems like a good idea run by a slacker, in my opinion. Grandma does not need a "Daycare" she needs CONSTANT care, PROFESSIONAL care, people who know more about this than we do. I am not OK, my mother is not OK, my grandfather is NOT OK, and my poor grandmother will never be OK. I could reach out and fall flat in every direction. I work, I come home to eat and sleep then go right back to work. No outlet, No relief from this chamber. This morning I had to hide my boyfriend while I fought to get my grandmother's shirt back on her. My grandpa is tired of dealing with it, but won't put her in a facility or medicate her, he's tired and I'm sick and tired! Literally, I've been physically ill for months now, but our low funds, lack of insurance and worry keep me (the only working person) from seeking help. I know not what is to come, but whatever it is needs to hurry. NO ONE should ever go through what we do, everyday. I would never wish this on anyone.

We need help. I need help.